Yep Food Allergy Issues Again...we have to go through this again!

(Ignore the hyphenated links- I didn't put them in there. Don't click on them - they are just spam)

Remember my issues with gluten free food and camp last year? If not here it is: http://www.blogger.com/blogger.g?blogID=8805802396615111471#editor/target=post;postID=7575027716423073464;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=11;src=postname
 Hopefully that takes you to the right place- if not it was published last July (2012).

So we had issues last year with the camp cook cooking my son's gluten-free food. Guess what?!?! We are having the same issues again this year!!!!!!! I have been so ticked off this week that I haven't been able to post. Here's what happened.

I emailed the camp cook (same as last year - unfortunately) and camp director (also same as last year). Here is an abbreviated version of my email.

Hi,
I need a menu of Cub Scout Resident Camp (2nd week) emailed to me.
My son, Pack xxx, has a raw carrot and gluten allergy. He is a Webelos so he will be there for the whole week. I will provide a revised menu (based on the menu you provide) with what he is allowed to eat and the substitutions that I have sent in place of what he isn't allowed to eat. He will bring 2 copies of the revised menu (1 for himself and 1 for you) and his gluten-free food with him when he checks in. If you need more than 1 copy of the revised menu let me know. Some of the food will need to be frozen or refrigerated until used. It will all be labeled with his name, Pack #, preparation directions, and the day/meal when he is to eat it.
I will be there on Fri June xx . If you could have the binder with the ingredients available on that Friday I will look up the items I have questions about.  Please send me the menu as soon as possible so I have a chance to look over it.
If you have any questions feel free to contact me via the info below or when I am at camp on Friday June xx.

We have other children in our Pack with food allergies. I will pass the menu on to them. Should they use the same emails to contact you with their specific allergies, alternative food, etc? Or is there another process with additional paperwork we need to fill out?

This is the exact response I got from the camp cook:

"Menu is attached. Who will be helping your son prepare his special meals. We are able to lend some assistance, but a leader or your son will have to take responsibility. Bill."

I could not believe it! We were going to go through this again?!?!?!

My response: (My husband assures me that ALCON means All Concerned. LOL)

"ALCON,
We feel that response is not acceptable since earlier this year Rxxxxxx Xxxxxx had already assured me that we would not have the same issues as we had last year. I am not asking for a reduced rate (due to us providing his food), that you change your menu for him, provide food that he is able to eat, or even that you have an allergen-safe prep area in the kitchen. All we are asking is that you accommodate him by having an area to store his food (which seemed to be an issue last year) and have someone to heat it (mainly microwave). You seem to be asking that we pay an additional camp fee for someone to be on call to cook his meals, or inconvenience one of his leaders by forcing them to fix his food, or make him responsible for his own food. While we don’t disagree that at some point he needs to be responsible for his own food, this is Cub Scouts- not Boy Scouts. I am not sure he needs to be responsible for preparing/cooking his own food in an unfamiliar kitchen with unfamiliar appliances. I am positive you do not want a dirt loving, unsupervised kid in your clean kitchen, due to obvious sanitary reasons.

A little history:
Two years ago we did not have any problems. I met with the cook and Dxxx “nickname” about 2 weeks before camp. We went over the menu, made an alternative menu for my son, and the cook even changed some things - such as serving the spaghetti noodles separate from the sauce so all I had to do was send in the gluten free noodles to be cooked. She or someone on staff cooked his food. As far as I know there weren’t any issues.

Last year there was an issue with everything. I asked for the menu well in advanced. I asked a few specific questions (such as if the potatoes and eggs were box or real) via email to the cook - to which I received no response until I contacted some additional people. I finally received a response the day before my son was to report to name of camp stating that I needed to come to camp and look in a book to check for allergens. I would have been glad to do this had I been previously informed. Upon arrival to camp, I was informed that I needed to provide a cooler for his cold food and a box for all his other food. I was also informed (very rudely) that I would need to report to the kitchen about 15 minutes before meals to prepare everything for him. Again, I was not informed beforehand. I was not there as his parent. I was there as a leader for my younger son. In the end I believe Rxxxxx Xxxxxxx assisted with most of his meals, while I prepared one or two meals when Rxxxxx was busy. During my preparations I noticed that he was not even listed on the allergen board in the kitchen!

After our experience last year I spoke to several people about setting up reasonable procedures for the name of camp cafeteria regarding food allergic scouts; hoping that we wouldn’t have the same issue this year. I was told the issue was discussed and handled at a camp planning meeting in September, which I was unable to attend due to a conflicting schedule with our Pack. When I spoke to Rxxxxxx Xxxxxx at the University of Scouting he assured me this issue was resolved. He also mentioned that name of camp plans to have gluten free cereals available and to serve a gluten free dinner. He also assured me that there would be someone to prepare my son’s meals.

As previously mentioned we feel your response is not acceptable. His doctor believes that it is necessary for him to stay on a gluten free diet. Again we are not asking for any special accommodations, other than someone to prepare (mainly microwave) his food. If you are unable to accommodate this request, please let me know as soon as possible."

The next email came from the camp director:

"we will certainly have someone there to assist your son. The issue is this. We have a floating kitchen staff meaning the same people are not cooking every meal. So it might be a bit confusing. So during those meals that he needs assistance please have him come to the door with a leader to let them know. Ask to speak to Jxxxxxxx. I'm sure we can work it out! He can always find myself or Wxxx Cxxxx to help him as well.
Rest assured we will take good care of him!"

While I am glad they more or less said they would fix his meals I am not completely happy with the response. First- if you have a "floating kitchen staff" then why is he to always ask for Jxxxxxxx? If she is going to be in the kitchen at all times why can't she just fix what he needs fixed? Second-It seems like they are saying that he will have to go ask them to fix his food every meal, after he has arrived for his meal. Meaning that everyone else will be eating and he will have to wait. They need to rethink this since almost ever meal he needs something replaced. Every meal he will have to wait at least 5-10minutes before he gets all his food? They have a limited amount of time to eat. If he is waiting 10 minutes for his food then that leaves him with very little time to actually eat it...especially since he will have to wait for it to cool as it will be too hot to eat immediately. I guess I will find out what happens when we get there. But they have to put something more permanent in place since food allergies are becoming more of an issue with kids. Guess this will be my next project...going to all the meetings and lobbying for the rights of kids with food allergies. :-(

Camp and Gluten-free diets don't mix. :-(

Good News: My ½ week at camp went well, as far as the kids, activities, etc. The kids seemed to have a blast.



Bad News: The cook is an @#$%@^#. I emailed the Monday before camp with specific concerns- such as if they used real eggs, potatoes, etc. and if certain things contained gluten. He NEVER emailed me back! I finally called a higher-up Friday night and left a message. We were to be at camp Sunday afternoon…So I receive an email Saturday morning from the cook. He was obviously pissed off. Here was his response…on SATURDAY MORNING (when we had to leave Sunday to go to camp!!!):


“My suggestion to you is if you are concerned about any food items you can bring your own food as a replacement. The items must be in a clear plastic zip-lock type bag with the child’s name and date of packaging clearly marked on the outside of each bag. We will store the food items in the kitchen for you and have them available for you to prepare at each meal service. A microwave oven and other kitchen equipment will be available for your use. We also have a book with the list of ingredients for the items being served at camp available in the kitchen for review. I hope this helps.”



Ummm HELLOO!!!! The camp is about an hour away but I had been near it 3 times the week before. If I had known there was a book I could have stopped by and checked it. But telling me Sat morning- less than 24 hrs before we have to be there, isn’t going to help me! I also obviously didn’t read it very well because I completely missed the “available for YOU to prepare” part! But more on that later.


So we get there. The camp director volunteers to help haul my cooler to the kitchen. I go in and start unloading it. The cook gets an attitude and says “You have another cooler right?” I was like “umm no. This cooler contains things other than his food items. It is for our camp site. I wasn’t aware I needed to provide a cooler. Everything is marked with his name.” His reply “Fine! I will see if I can find something.” He returns with a clear tote. We store his food where it needs to go and I am about to leave when he says: “you are going to be here 15 minutes early to fix his food, right?” –Remember when I said that I didn’t read the email thoroughly? So this was a shock to me. Literally. -- I was floored.


So I am waiting outside for the camp director, getting really pissed off. While he drives me back to our camp site I decide to confront him. I told him I didn’t realize I would have to fix J’s food. I didn’t have to last year (as I hadn’t been at camp) and that I would need to be there 30 minutes early because I didn’t realize I needed ready-made stuff. I provided the same stuff I did last year, such as pasta for spaghetti and mac &cheese that needed to be cooked. The camp director was like “We are short-handed. He is just asking you to volunteer.” I replied that he didn’t ask me to volunteer he told me to do it. And that last year I didn’t have this problem. I also thought that he was only being like this because I was in camp, where-as last year I wasn't.” He said he would look into a solution and get back to me.


So I fixed J’s dinner that night. Thankfully it wasn’t much- he was able to eat most of what was served. I just needed to heat a g-f roll and provide a cookie for dessert. At dinner the camp director told me that they had figured out a solution and the director of activities would fix J’s food. I thanked him and told him if I was there as J's parent, without any responsibilities, it wouldn’t be an issue but I wasn’t there as J’s parent. I was there in another capacity, one that kept me separated from J most of the day.


So the cook never said anything else to me, although he gave me dirty looks the whole time I was there. And I only had to fix 2 of J’s meals.


Oh and the other thing that ticked me off…they had a white board in their kitchen with a list of allergies on it. So every kid/group that had an allergy should have been on that board; so-so from this group has a peanut allergy, etc. Well J’s name/group wasn’t listed at all!! How are you to know which kid has an allergy if you aren't listing all the allergies?!? Maybe they didn't list him because I provided most of his food but he still should have been listed because he also ate their food. His raw carrot allergy should have at least been listed, especially since I wasn't providing alternatives for that. (Oh and by the way I was right about the salad bar- it was all pre-packaged mix with carrots in it.)


The camp directors told me they hope to keep the cook. I personally hope they don’t but either way they WILL be cooking J’s food next year…come to find out they get Federal Funding…and there is this thing called the Disability Act Law that all groups who get Federal Funding must comply to…Guess who is going to be pressing this issue next year? ME!! ME!! (Hand in the air!)


The thing that really got me in the end is that all the cook needed to do was communicate.
I wasn’t asking them to provide food, just tell me what was in their food. If I read the Act right I could have forced that issue (providing food) as well. But I am not here to add extra financial burden on them. I just want them to cook the food I provide. Is that so hard?

I HATE MENUS!!!

I hate menus!! Literally hate them!
Let me start over- Every summer my boys go to a camp--Which means that I have to go over the menu since J has a gluten and carrot allergy. Do you realize how much stuff is hidden in menus? And it isn’t like I get the same cook every year. Some “cooks” are not really cooks, rather just hired help to cook the food, and they have no clue about allergies. Of course even if there is a “real” cook there that doesn’t mean anything. Last year the “real” cook, who actually knew what gluten was, got fired in the middle of the week because evidently she went crazy-literally. I was told she barricaded herself in the dining building and thought people were coming for her. They think she went off her meds- which isn’t comforting since my kids were there!!

But anyways back to menus. So I am reviewing the menu for this year…and it is full of pre-packed foods- which means more possibility for it to contain wheat/barley! I know it is easier for the cooks to prepare but come-on! The closest they come to home-made meals is a salad-bar…And that probably contains the packaged mixes of lettuce and whatever. They don't even have spaghetti on the menu this year.
I am just hoping that the “cook” I am emailing knows what he is doing. At least I will be at the camp for part of the week to make sure J gets what he is suppose to (and doesn't get what he isn't suppose to).

Really people?!?! Excluding kids based on food allergies.

J is gluten-free due to his reaction to gluten. He does not have celiac but is "sensitive" to gluten. This week I was confronted with a comment that made me very mad. I had asked about the possibility of an organization we are deeply involved in of purchasing a gluten-free (g-f) pizza. The place they were buying pizza from offers g-f pizzas for the same price as non-g-f so I didn't see it as a big deal to ask. The response was: "I do not want to start catering to all dietary needs, that could lead into a big ordeal.". Whether she intended it to or not, her response rubbed me wrong. My son does NOT have a "dietary need" - he has a food allergy!! To me, "dietary need" is not the same as allergy. And if we had an child with a more severe reaction they would HAVE to "cater to their "dietary need".
I responded and included the following: "I understand your position. However, I disagree. J is a member of this organization and it is medically necessary that he does not eat anything with gluten. It is absolutely possible for ANYONE to eat a gluten free pizza but it is impossible for J to consume non-gluten free pizza. To exclude him is unfair and directly telling him that he didn’t matter. He has gotten upset every time the organization has had a food event in which he can’t participate. I apologize- it was not my intent for my request to escalate as much as it seems to. Again I thought it would not be an issue, given where the organization was ordering from and the cost being the same."


I decided to look up the laws for people with food allergies. Here is what I learned:

"At a recent food allergy roundtable in New York City, Mary Jane Marchisotto, Executive Director of the Food Allergy Initiative (FAI) shared the most recent statistics on food allergies, saying that, “Every classroom now has two students with food allergies.” A July 2011 study funded by FAI and published in Pediatrics, found that 15 million Americans and one in every thirteen children now suffer from food allergies – a significant increase from prior data." http://www.forbes.com/sites/work-in-progress/2012/04/27/virginia-enacts-stock-epinephrine-law-to-help-protect-students-with-allergies/
"A food allergy may be considered a disability under federal laws such as Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA)." http://www.foodallergy.org/section/disability



I also called my son's specialist. I never asked for a letter stating his sensitivity to gluten because I didn't think I would need it since we homeschool. I am now requesting that letter.

In the end the organization won't provide g-f pizza for J. While I still think they are being unreasonable, considering there is no added cost or effort on their part, I am fine with it. I will once again provide my son with food, while trying to explain to him that having a food allergy is not an exclusion from participation and that other kids don't think he is weird for not eating "normal" food.. :-(







UPDATE: So we went to our event with our g-f bought pizza. And one of the members of the organization had gone out of his way and purchased gf pretzels and cookies for J. He also gave us money for the gf pizza, saying that we shouldn't have to pay for our own food when it was a organization event. I am not sure if he purchased the items out of his own pocket or if the organization paid for them. I appreciate what he did because it made me feel like someone was on my side. At the same time if it is out of his own pocket it makes me feel bad. He shouldn't have to pay it himself either- it's not his kid. But again I really appreciate it. He even went out of his way to talk to J and show him where the stuff was. He really is a sweetie! :-)

ADHD; Food Allergies; Seasonal Allergies; and more

I am sitting here trying to decide where to start...I have learned so much info over the last few weeks it is frightening! I guess let me start with my ADHD son's diet...if you read previous blogs you will find out that he has a red dye and gluten allergy. While researching food allergies in general I learned more than I ever wanted to learn! LOL I met another mom who has an autistic son. She changed his whole diet and he has now improved so much that he would be considered a "high functioning autistic". Then my sil and I were discussing some of the changes in the autistic child's diet and she was telling me what she had learned about certain food items. Then I read this book: "Animal Factory". If you get a chance you should read it. It is an intense book about how America's food is being processed and how bad it now is for you. Anyways so after reading that book and everything else I had learned I took a step back and looked at what my family had been eating...It wasn't a pretty sight. I started incorporating more veggies and fruits (organic and local grown) into our diets. I started cutting out processed foods...I am no saint so believe there is still processed foods in my house but I am hoping to convert my family to all whole cooked foods within the next year. This will be particularly hard for them since they seem to be addicted to Mac&Cheese! I am also slowly changing over to local farm meats, antibiotics and hormone free. I also started my kids on probiotics, Fage (which also has probiotics), and vitamins, particularly the Omega 3s. The probiotics replace your good bacteria that any antibiotics will kill. If you ever have to take an antibiotic you should always take a probiotics. Fage is basically an unsweetened yogurt but much better for you than yogurt. I add honey and fruit to it for the kids. I had read lots of research that said Omega 3s are good for ADHD kids (and any child on the spectrum-Autistic, Aspergers, ADD, ADHD, etc). I want to add fish oil, zinc, magnesium, vitamin K supplements at some point since there is also research on these with the spectrum kids. So over the last 2 weeks or so I have changed our diet and I saw that for my ADHD son this has drastically improved his symptoms. He has been sleeping better, hardly any hyperactivity, and better concentration. While his physical symptoms have improved his emotional have become worse. Some of these emotional symptoms I am not even sure he had before...He acts like he has been mortally wounded when anyone touches him. He is suddenly very afraid of things he didn't fear a month or so ago. For instance: at the beginning of summer I had to constantly watch him when we went swimming because he liked to go into the deeper water (even though he couldn't swim very well). Now he is terrified of going into water above his waist-to the point where he won't even do swimming lessons. Even if I hold him and go in the deeper water he freaks out, afraid I will let go of him. As far as I know he hasn't seen any movies/shows with drownings, etc so I am not sure about this change. And it isn't even just the water -it is other things too. These are not symptoms that I have found to be linked to ADHD in any of my readings...I have seen them linked to Aspergers though...So I have started researching Aspergers. I am lucky to have a friend who has an Aspergers son and I can go to him with my questions. My son does not exhibit the necessary requirements to be diagnosed Aspergers. However I think, given that they are all on the "spectrum", just as Aspergers share some of Autistics traits, ADHD can share some of Aspergers traits. I am just wondering why it seems like these symptoms have appeared all the sudden...