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).

More Medical Issues...

So yesterday was our yearly check-ups for the younger boys, J & N. I purposely had the appointments back-to-back so I could get it over with. :-)

N is now on the growth chart! LOL Last year he wasn’t even on it. Yea! He is having a urine re-test to be cautious but otherwise his checkup was great.

On to J…so on top of his ADHD, Kindney-reflex, Asthma, IgA Deficiency, Autoimmune disease susceptible, Washed blood only transfusions, Aspergers, Raw Carrot Allergy, Gluten-free self he now has Scoliosis!! Seriously. Can you believe it?!?! I am so P.O.ed that I don’t know what to think, do, or say!! Seriously! This child already has so much to deal with and now this. I completely thought to myself “Are you joking??!! Couldn’t it be one of the other boys? Why him?” I know that is mean to wish it onto another one of my children but he has sooooo much to deal with already!! How is this fair to him? I am soooo MAD!! This was/is me:

So last night I read up on yet another medical issue for my poor middle son… Scoliosis. The experts don’t know why it happens. There are 2 different kinds- C or S curve.


J has an S curve.

There is about a 20% chance that it won’t get worse. If it does get worse (typically happens as a child goes through puberty) then he can wear a brace that will prevent his spine from continuing to curve. Once he is finished growing, if his spine is curved to a certain degree (from what I have been told it is like using a protractor for measuring math angles), then he will have surgery to fuse his spine. If untreated it could cause organ issues…like crushing them. If you “google” scoliosis you will see some pictures that are not that nice to look at.


In the end I am sure I will have to look forward to many years in a brace and then another surgery! On top of everything we already are dealing with!! I am sorry to be a pessimist here but they told me that his kidney reflex had a 90% (or some such high percentage) to naturally reverse itself by the time he was 5…he had surgery when he was 6 1/2 yrs old. So you can see the reason for my bitterness and lack of hope here. In this moment I just cannot look at this as the “glass is half full”. This is just too much on top of everything else.


Even though I am disheartened by the diagnosis I have decided to be pro-active. From the articles I read it seems that people who do certain stretches, see a chiropractor, and/or do karate (I guess because they do a lot of stretching?) tend to not curve as bad. So we visited a chiropractor today- someone we have known for years. He said he has dealt with many children who have scoliosis. Most of the kids he has worked on have not had to have surgery. The stretches/chiropractic visits seem to help. J will see him once a week for the next month and then once a month until he hits puberty. We are also going to start doing back stretches every day. As for the karate- if we had the money I would really consider it but as it is we just can’t afford it. The main issue at the moment is getting him to not do flips, somersaults, bridges, etc. Evidently these are no-nos for people with scoliosis…unfortunately he is determined to work on his flip throw-in for soccer. (See here: http://www.youtube.com/watch?v=fqIJSzOf7bM)

I am convinced that somehow all his issues are connected, even though supposedly scoliosis is not an autoimmune disease (at least as far as they know). How could one little boy have all these issues and they not be connected??