REGID - Registry for Eosinophilic Gastrointestinal Disorders

There is now a Registry for Eosinophilic Gastrointestinal Disorders (REGID) at http://regid.org/

Eosinophilic Esophagitis (now abbreviated EoE) and Eosinophilic Gastrointestinal Disorder (EGID) patients can register soon, but they are still working on the registration/application. REGID was funded by the NIH and is a national registry of people affected by EoE / EGID. More info can be found on their site, as well as a short video by two of the Drs involved (from Cincinnati). The following paragraph was taken from their website:

"The Registry for Eosinophilic GastroIntestinal Disorders (REGID) is a collaboration of medical centers, professionals, families, and individuals whose mission is to improve the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders. REGID is not only a national registry of people affected by eosinophilic gastrointestinal disorders but also a forum to enhance the connection of people to resources and research."

They also have informational pages about Eosinophilic Esophagitis and EGID. It sounds like it will be a beneficial resource! Please continue to check back on the site and when it is all up and running, be sure to register all those diagnosed with EoE or EGID as this will not only lead to a better count of how many people have the disorders, but may lead to further research grants specifically for the disorders!

What An Amazing Week for Eosinophilic Disorders and Food Allergies in General!

WOW! What a week full of amazingly wonderful news!  First, the top 200 charities were announced in Chase Community Giving on Tuesday, July 13th.  Out of 500,000 charities that entered, APFED (American Partnership for Eosinophilic Disorders), CURED (Campaign Urging Research for Eosinophilic Disease) and Kids With Food Allergies were ALL voted into the top 200 and they will receive $20,000 EACH.  That is $40,000 for Eosinophilic Disorders and a total of $60,000 to benefit food allergies in general!!  Every vote really did count in this one and it was a real nail-biter, but thankfully it was also a huge success! 

Well, the good news doesn't stop there!  On July 14th, there was a phenomenal NIH press release: "NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant!"  That now also includes research into Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disorders via CHOP, Cincinnati Children's, and University of Colorado, Denver, which have the leading Drs in the field treating & researching EE/EGID!  WOOHOO!  This is truly a week to celebrate, as EoE (formerly called EE) and EGID are finally going to get the funding for research that they have needed and deserved all along.  

Here is the link to the NIH press release for the full story: 

http://www.niaid.nih.gov/news/newsreleases/2010/Pages/CoFARexpands.aspx

I just had to share this news.  I hope it puts a big a smile on your faces as it has on mine!  :-)

First Experiment with Bob's Red Mill Gluten-Free Pizza Crust Mix

I decided to try to make a pizza for the whole family last night. I used Bob's Red Mill Gluten-Free Pizza Crust Mix and substituted flaxseed meal and water for eggs, as directed on the package. The result was better than I had imagined! The crust was light and airy, not hard and "crusty". It was AWESOME, not to mention very healthy! I used olive oil, fresh minced garlic, Contadina Pizza Sauce (1 can), Hormel Turkey Pepperoni on one side and Trader Joe's Fire Roasted Red and Yellow Peppers along with a fresh sliced tomato on the other side. I topped it off with a little Daiya shredded mozzarella flavored "cheese" (you don't need much as the flavor is rather strong) and All Natural Frontier Pizza Seasoning. The picture above was taken before it was cooked, but the finished product is pictured below.  Dad and I LOVED our half. The kids enjoyed all but the garlic (whose kids are these????)! So, mental note for next time: only put the fresh garlic on the adults' half! Otherwise, it was a big hit! Dad and I devoured our slices and while it was probably more satisfying than regular pizza, I could have easily eaten a third slice. :-) I have 2 other pizza sauces to try, and even though Contadina has corn syrup (not the healthiest thing), it may be the one we choose in the future just based upon flavor. I'll update here when I've tried the others.

I've included photos of the process (after actually working the dough into a pizza crust shape on the pan. However, in the last one (at the bottom),which was after it was fully cooked, I forgot to take the Daiya back out of the fridge for the picture showing all of the ingredients I used.

For anyone who wants to try this mix, I do recommend it. I may try to add a little tarragon in the future, to make it taste a little like the crust at Peace Pizza (they have delicious and unique pizzas). I could easily get creative, but I have to consider what the kids will eat.  Happy pizza making!!!!

Helpful Cookbooks

"The Allergen-Free Baker's Handbook, How to Bake without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree nuts, and Sesame" by Cybele Pascal 

This is my new favorite cookbook.  I can now bake "NORMAL" foods for my son!  Blueberry Boy Bait (blueberry coffeecake) is AMAZING!  She has recipes for cakes, pies (including a allergen-free & gluten-free pie crust recipe), muffins, cookies, brownies, quick breads, and sandwich breads, pizza, and even cinnamon rolls!  Have you previously found a safe recipe for graham crackers, focaccia bread, or matzo crackers?  You'll find recipes for them in this book!   Additionally, she provides recipes for 2 Basic Gluten-Free Flour Mixes - one for breads and one for everything else.  She also has a wealth of information about "replacement" ingredients (alternatives to eggs, dairy, nuts/nut butters, and wheat), where you can find them online, and so on.  As you can probably tell, I HIGHLY recommend this book!

"Allergy-free Cookbook (no eggs, no dairy, no nuts, no gluten)" by Alice Sherwood.
I purchased this book awhile ago but am looking forward to trying some of the recipes now that my son has passed many of the food trials needed to use several of the ingredients.  While her recipes may list some allergens, she lists specific instructions for substituting ingredients to make the meals safe for those dealing with those particular allergies, and it's very well laid out and easy to follow.  This book not only gives you recipes to use for breakfast, lunch and dinner (side dishes, appetizers, meat dishes, pastas & rice dishes, soups, sauces and dressings, etc) but it also discusses the ins and outs of living with food allergies, touching on some topics such as school, eating out, traveling, special occasions, and much more.  This is another must-have for the allergy-free cookbook library.

"The Allergy Self-Help Cookbook" by Marjorie Hurt Jones, R.N.  This book provides over 350 recipes that are "free of All common food allergens" (corn-free, egg-free, gluten-free, milk-free, sugar-free, soy-free, wheat-free, yeast-free).  Yet another very helpful cookbook that runs the gamut from breakfast, lunch and dinner to appetizers, desserts, etc as well as specific information about alternative flours and other ingredients. She does have a section dedicated to goats milk and goats milk cheese recipes for those who are not allergic to goats milk.  For those with EE or EGID, the proteins are too similar and it is not something that you can usually tolerate if allergic to milk.  This book gets into a lot of detail about alternative ingredients, which I have found quite helpful.  It also talks about food families and rotation diets, which may be helpful to some people.  This is definitely another worthwhile book to have.

APFED also has a wonderful cookbook to help with the special dietary needs of those with Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Disorders.  
It’s called “Extreme Cooking for Exceptional Diets”, and it is available via the APFED website.
http://apfed.org/store.htm 

Even a single food allergy/intolerance can have an emotional effect on a child

Last night was rather an emotional roller coaster here.  My daughter was sobbing because she wants to eat like everyone else; she wants to eat what everyone else eats.  She feels so left out at school; some kids go so far as to tease her with foods she can't eat and she doesn't think many people understand.  I tried to explain to her that while it may seem unfair that she can't eat foods with dairy in them, I have worked hard to make sure she has yummy alternatives to just about everything that has dairy in it.  I also explained that while she might not be aware of it, there are so many people with food allergies, worse than what she has, who are going through the same thing or worse every day.  It is a matter of accepting that you can't eat something because it isn't healthy for you, realizing that there are so many other things that you can have, and not letting it get to you.  I realize that is difficult for an 8 yr old, but I'm hoping she will embrace that way of thinking one day.

My daughter does not have Eosinophilic Esophagitis like my son does, but she does have a problem with dairy.  It is not a true allergy, but more of an intolerance, yet not just a lactose intolerance.  So she is not actually "allergic" to it, but for the sake of making things easy for others to understand, we occasionally call it an allergy.  Usually, we just say it's a "problem with dairy" and simply explain that it makes her sick.  It is not as simple as a lactose intolerance, as she reacts to the milk, cheese, casein, whey, with or without lactose.  It causes severe stomach pain, leg pain, and occasionally vomiting.  It also messes with her GI motility, to put it nicely.  While it may not be a true allergy, it is an immune system response and we have seen evidence of that in her scopes and biopsy results when we were investigating the cause of her GI problems (when she was younger). 

When she was younger (just before she turned 2), she had C-Diff (clostridium difficile), a bacteria that took over due to antibiotics (for an infection) and anti-fungal use (for thrush).  The C-Diff did damage to her intestines as it was not diagnosed quickly enough.   She was hospitalized for 3 days due to severe dehydration from over 2 weeks of symptoms before she was finally diagnosed.  After that was successfully treated, her body was reacting to everything she ate and she had to get a feeding tube (NG tube).  The treatment for that was the same elemental formula that her brother is now on, which was prescribed to allow her gut to rest and heal.  She had that for 6 months, which was 3 months longer than expected, but then she could eat again.  However, she was still having problems with impacted stool, nausea, vomiting, stomach pain and leg pain which turned out to be from the dairy.  It took several more months to figure that out.

She was also developing some symptoms or behaviors that are commonly seen with autism until I removed the dairy.  I had recognized those things (hand flapping, palilalia, etc) and realized what they are usually associated with due to my experience with her brother.  When we finally realized it was the dairy that was causing her severe gastrointestinal problems, not only did the GI symptoms disappear, but so did the autistic-type behaviors!  That is when I started wondering what the link was, and found out (via her Drs) there have been studies linking malabsorption/malnutrition to Autism Spectrum Disorder (ASD) symptoms.  That makes total sense and could explain why she started to display them (she was suffering from malabsorption as the dairy caused inflammation in her GI tract) and may possibly be why so many kids with eosinophilic disorders are on the spectrum (it isn't uncommon with celiac, etc as well).  However, that's a topic for another time...

Unfortunately, people aren't always understanding or thoughtful of how a child might feel and they don't always consider her when choosing snacks, treats, etc.  This really affects her at times, but she gets embarrassed if someone sees her cry, so she won't let them know how hurt she is.  She waits until she gets home and tells me, then I tell others, who don't always believe me because she "seemed fine" or "didn't act upset".

She has been left out of things, but so has her brother.  My heart ached when he told me about an experience he had one day in 3rd grade.  He was solely tube-fed then and wasn't able to eat anything, which everyone was well aware of.  The class was given a survey of their favorite fruits.  He filled it out, based upon what he used to eat, thinking it was just something they had to do.  The next day, the teacher brought in the top choices with chocolate to dip them into.  This was a class REWARD for good behavior or good grades or something!  My son was not only left out, but he was forced to sit in the hallway outside of the classroom door all by himself, listening to the rest of the class enjoy themselves, which was more of a punishment to him.  There was also nothing offered to him (non-food item) or anything.  Not only was this NOT a reward for him, but it was pure emotional torture for an 8 yr old child.  That is the same school that my daughter is now in.

I have worked really hard to make sure she has safe foods that are substantially similar to what everyone else has.  I bake or buy safe foods when she is going somewhere and others will be eating something like cake, cookies, ice cream, pizza, etc.  Whole Foods has an awesome vegan cupcake and often has a freshly made cheese-free tomato pizza in the refrigerated section (ready to be cooked in the oven) that I can buy in a pinch when I have enough warning.  Rice Dream or soy ice cream is delicious!  Silk soy milks are delicious.  Daiya "cheese" is now available and that helps tremendously.  There are some great options out there.  However, there are times when I don't know that the class is going to have a treat and she'll feel left out just eating a cracker or a pretzel when they're having cookies because there is no attempt by the school to let the parents know there is a food allergy or sensitivity (or whatever it is) in the classroom.  Our former Brownie troop consistently made her feel left out and didn't consider her needs or feelings, to the point she had decided to quit.  Instead, we switched to a WONDERFUL new troop with an absolutely amazing leader.  They are careful to make sure everyone is included and no one is left out.  They make sure that snacks, etc are safe for EVERYONE!  That's the way it should be everywhere!  Unfortunately, it's at a different school, so she doesn't get to socialize with the local girls, which is one main reason why we got involved in Brownies to begin with.

So, it's summertime...why in the world would she have gotten so upset when she has not been at school, or any event where she might have been left out?  Well, when I was away with my son at camp a couple of weeks ago, she and her dad visited her grandmother for a few days.  Her grandmother doesn't remember things like what the kids can and can't have.  It wasn't on purpose - it was an honest mistake.  There's no blame; it just is what it is.  Dad was not keeping track of what her grandmother was feeding her for lunch one day and my daughter ate a sandwich with cheese, even though she knew better than to do so.  She said she didn't have any GI problems after ingesting it, so now she thinks she has outgrown it.  On occasion, she has had times when she has eaten something with dairy and for some reason, she doesn't have a problem, but that is rare.  Whether it's because she has stayed away from it for so long and she can have that one bite without a problem, or whatever.  However, other times she has had something and had an awful reaction where she has been up all night screaming and crying in pain, retching, etc.

This lack of a reaction has happened before on rare occasions and on two such occasions we let her have some more to prove to her that it will happen again, hoping that she will remember for the next time.  I am not doing that again.  I am not going to go that route again because, although it is my job to help her understand, it is also my job to keep her healthy.  Exposing her to something that I know for a fact will make her sick when I know for a fact that she has not "outgrown" her reactions to it, just to try to prove something to her (again) is not the right thing to do in my opinion. 

It didn't help that one of my family members told her during a holiday get-together that she should eat tiny amounts of dairy every day and she'll grow out of it.  That was one of the worst possible things she could have told my daughter (who was only 7 1/2, by the way).  Since she thought this family member was a Dr (because she works in a hospital), my daughter didn't believe me that she was mistaken.  It was leading to behavioral issues and emotional outbursts, too.  I wound up having to take her to an allergist at CHOP, who explained to her that this is not the sort of "allergy" that she will outgrow.  She will have to avoid dairy to stay healthy.  I reminded her that Grandmom (my mother) gets sick from dairy, which she is WELL aware of and has experienced the effects.  Others in my family have a problem with dairy.  I just happen to be the only mutant in the family who doesn't have the same problems or even allergies for that matter. 

Dairy is not an uncommon thing to be allergic or intolerant to.  It is not uncommon for it to cause tummy problems and other various problems.  People don't usually think of it (and/or other foods like wheat) as the possible cause for chronic ear infections, asthma or sinus infections (especially in kids), so they don't know to try to eliminate it from their diets to see if that will help.

Foods can sometimes cause different delayed symptoms instead of the hives or anaphylaxis that most people think of with immediate allergic reactions.  Whether they are "true allergies" or not, they are an immune-system response of some sort.  The body gets confused and reacts inappropriately.  This is something I have learned as a mom, but I never understood it as a kid and didn't fully appreciate all that my mother had gone though with her childhood allergies and related illnesses.  My mother wasn't expected to live through her childhood.

Thankfully, last night ended on a good note after lots of crying and frustration.  I'll continue to do my best to promote awareness at school for her food issues as well as food allergies in general, despite the general lack of understanding or cooperation on the part of her particular school.  That will mean I'll volunteer to be a room mom again, continue to buy safe snacks for the entire class and continue to try to ensure that she has a safe alternative treat available at all times.  She will do her best to try to accept the lack of dairy vs fighting it and mourning it.  We'll see how that goes.  I do have faith that she'll understand one day, but for now she's a little girl and it's to be expected that she'll be conflicted.  I just wish it didn't have such a huge affect on her.

Disney With Special Dietary Needs and Asperger's

I was just talking to someone about Disney World today and now I'm yearning to go.  Not possible at this point, but now that my mind is on it, I might as well post about it.  I was just talking about what a wonderful option it is if you can swing it for Halloween (Mickey's Not-So-Scary Halloween Party) in lieu of Trick-or-Treating, with all of that candy that they can't eat.  You might want to consider taking a few safe candies/treats/non-food items with you to give to your child as they will have trick-or-treating stations in various areas around the park.  Enjoy Life Boom Choco Boom chocolate bars are a favorite in our house. 

I have already created a page dedicated to contact info for Disney and a book about traveling to Disney with various disabilities and special needs.  The book is "PassPorter's Open Mouse for Walt Disney World and the Disney Cruise Line", by Deb Wills and Debra Martin Koma, and I found it VERY helpful.  It provides a lot of details that will help with almost every, if not all disabilities and special needs. 

The people at Disney were extremely helpful.  They made it clear that part of their job was to do what they could to help me relax and enjoy the vacation I was paying for, instead of stressing over what, if anything, I was going to be able to feed my child.  I e-mailed them immediately after booking the trip (this was 2 yrs ago).  Shortly after they received my e-mail, detailing my son's dietary issues, I received not only an e-mail back with lots of great information about the specialty food products they have available to them, what foods might contain problem ingredients, etc, but I also rec'd calls from each of the chefs where I had made priority seating arrangements (as close to reservations as you can get there).  When I made additional priority seating arrangements at other restaurants, I rec'd additional calls.  They also went over what products they had available to them at their particular restaurant, and they were able to make sure they had the products at the particular restaurants ahead of time.  When I arrived at the restaurant, I just needed to ask to s/w the chef and they came out to go over our needs (they already knew but just made sure they had it right).  

The only downside was that you have to pay the adult price vs the child rate, but it was worth it to make sure that they have a safe meal, at every meal.   I went with the meal plan and that worked out very well.  There was even counter service in each location that had something, albeit not too many choices for our particular needs (too many foods to avoid).  I was very happy that they had anything at all, though.  They also had soy milk for my daughter just about everywhere.  It wasn't chocolate Silk Soymilk, but a little Hershey's syrup did the trick.  I can't recall if they had ricemilk or not, but I believe I brought the vanilla rice milk with me each day and they gave me some chocolate syrup to mix with it as needed.  

As for the lines...there is a "Guest Assistance Pass" that is invaluable if you are eligible for it.  You absolutely need a note from your Dr though, specifying the diagnosis and why you/your child can't wait in lines.  Autism is one such diagnosis (includes Asperger's).  If your child has to have enteral feedings frequently, they might accept that.  They won't tell you in advance, though.  You have to get the letter and show it to them the first day in the parks.  The one guest assistance pass will be valid in every park for the length of your stay, and it is for the whole party, so it doesn't split you up.  When we were there, it worked similarly to Fast Pass, but if it was not a Fast Pass enabled ride and the line was long, you could use the handicapped entrance.  We didn't use that when the lines were short, though, as we didn't feel that was right to do.  There are often similar passes in other amusement parks, although I have not found them to be the same or as good as the Guest Assistance Pass at Disney.

Speaking of Dr's notes, it is wise to have the Dr mention in the same letter that you/your child has food allergies and must bring safe food into the park.  This is something you can take with you to various amusement parks, sporting events, etc.   The book I mentioned above also talks about places to rent wheelchairs if there is a need (some of our kids have a hard time walking for any distance, experience pain &/or weakness, etc).

I really wish we could go back.  I REALLY do.  It makes a world of difference in my son, and I have heard that from many other parents, especially those with kids on the spectrum.  It also really makes a huge difference in Mom (that would be ME)!  It is one of my favorite places on earth and if I could afford to, I would be a member of the Disney Vacation Club, with either a week every year in Bay Lake Towers, Saratoga Springs or maybe even Wilderness Lodge.  A room with a kitchen would be ideal.   Ah, but I'm dreaming...where's my fairy godmother when I need her.  ;-)

We've come a long way, baby!

Below is a "video" that was done a few years ago for APFED.  It is a montage of photos of kids with EE that is available on YouTube.  My son is pictured in it a few times.  See if you can spot him.



Yes, the toothless kid pulling his shirt up to show his belly is my son, as is the split screen of the skinny kid with the PEG tube (the first surgically-placed tube) and the boy sitting on an exam table with his Dr.  The toothless picture was just after getting back from the hospital when he had his mic-key button (type of G-tube) placed.  They removed his loose tooth for him while he was under so the tooth fairy visited the hospital and gave him a silver Liberty dollar (one of the newer ones, of course).

We've come a long way from then.  He was only getting the enteral formula back then, but now, 5 years later, we have enough foods to allow him to eat 3 meals a day if he can handle it.  They might not be exactly what everyone else is eating, but thanks to a lot of hard work and researching products, recipes, etc, they're pretty darned close at this point.  Hopefully we can get to the point where he will have his tube removed.  That is the goal, and it is a realistic one.  My personal goal is to have it out by the time he gets into high school, which is only 2 yrs away.  I think we can do it!  :-)

Allergy-free cooking

I have discovered a brand new cookbook!  It's my new favorite!  Cybele Pascal is the author of The Allergen-Free Baker's Handbook and The Whole Foods Allergy Cookbook.  I just made the most amazing coffee cake for dessert last night: "Blueberry Boy Bait!"  It was ab-fab!  I substituted Bob's Red Mill brand Gluten-Free All-Purpose Flour for the flour mixture that is recommended in the book, and it was delicious, although I am sure the recommended mix would be just as good if not better.  OMG it was GOOD!  I can't wait to try the other recipes!  The book has recipes for Red Velvet Cake as well as other cakes, breads (sandwich and dessert breads), cookies, brownies, tarts, and so on...  Her son has food allergies, so she went on a mission to develop safe recipes and create a cookbook as no others were available to her when she started out on her journey with allergies. 

Earlier in the day I had made a fresh loaf of bread for my son with Bob's Red Mill Gluten-Free "Homemade Wonderful Bread Mix" (yes, that's what it's called).  It is also really delicious!  He hasn't officially done a food trial of the new flours in these mixes, but I'm crossing my fingers that they'll be safe for him.  Bob's mixes use garbanzo bean and fava flours, mixed with other ingredients that we already know are safe.  We're on a food trial break right now and are trying to increase his intake of safe foods to minimize the enteral feedings.  We'll be meeting with his team at CHOP this month to discuss our plan of action.  I have a plan, but need to make sure they're in agreement with it.

Anyway, you can use the links provided in this blog entry to find the cookbook and flours I used.  I HIGHLY recommend the cookbook if you are dealing with any food allergies or celiac.  It's the best I've found, and I have already purchased many!

Boy Scout Camp

Well, we survived a week at Camp Ockanickon in Pennsylvania. Aside from a few bumps in the road during the week, we had a great time. It was a bit odd being one of only a handful of moms at a Boy Scout Camp, but at least I wasn't the only one. It was hot, but not too hot. We were in the Wakoda site, which was at the far end of the camp. So, it was a bit of a hike for mom to use the bathrooms or showers, but that was fine. It was good exercise! :-)

I was very concerned going into it, as we had never been at summer camp before, let alone for an entire week. Of course, I over-packed! So what else is new? I know better for next time, but had no idea how things were going to work. It turned out that all we needed to do was cook in advance for the week, store it all in containers to be reheated each day in the microwave, and I was able to store it in a walk-in fridge/freezer in the mess hall. I had to get there a few minutes early to reheat and serve it, or I ran the risk of not have any food left when I finally got to sit down at the table, but it worked out really well. The amazing thing was that he ate 3 meals a day (his safe foods), almost every single day we were there! It was the first time since he was 6 yrs old, and even then it was a real issue to get him to eat (of course, we didn't know he had EE back then). I only cooked one meal on the Coleman Stove, and that was Cherrybrook Kitchen gluten-free chocolate chip pancakes, which he shared with his senior patrol leader (and me, of course). They were really YUMMY!!! He only had an evening enteral feeding (g-tube) just before bedtime and that's something we even skipped one night.

The camp nurse (Bridget) was terrific. She had a lot of experience that ran the gamut from pediatrics to geriatric (no, I'm not yet quite old enough to qualify), and she even had plenty of experience with autism spectrum disorders! She was no-nonsense and did not baby the boys. However, she also really knows how to give a pep talk and motivate someone to do something they don't really want to do (or are afraid of for whatever reason).

The boys slept in lean-tos and the old-fashioned canvas tents (on platforms). My son chose the tent, and slept by himself every night. I was very proud of him. He was intent on overcoming the fears, dealing with the bugs and wildlife that surrounded us. I, on the other hand, decided to sleep in my own cozy nylon tent. It just felt better to have that between me and the mice, raccoons, skunks (which visited our site), etc. The last time I was there was in November for a troop camping trip and it was pouring rain 95% of the weekend so I couldn't use my tent. I didn't want to float away in the middle of the night, you know. That was my one and only experience in a lean-to. After you sweep the mouse droppings off of the bunks, and put down a sleeping pad and sleeping bag, it isn't too bad, but I definitely prefer my own tent. 

My son was in the Dan Beard program, which is for new scouts. While he had a very hard time with getting in the pool every day (probably anxiety), he was able to make up for it and complete his swimming merit badge requirements the last night there. He does much better with one-on-one instruction in all areas, but that isn't usually an option for most things. He earned the Swimming Badge, the Mammal Studies Badge and his Tote and Chip card, which (supposedly) indicates he has learned how to "properly" and "safely" use a knife, saw, and even an axe. They actually allow the boys to purchase knives (Swiss Army knives and lockback knives) in the camp's Trading Post once they earn that card! PARENTS BEWARE!!! You would likely have a very hard time seeing your kid use a knife without close supervision, which is exactly what happens there! Ugh! It was very difficult to balance being a normal mom with letting him do what all of the other boys were doing. Yes, he cut himself (just as he burned himself the first time he experienced a campfire), but fortunately it was nothing serious.

The biggest thrill for him was to shoot a rifle at the rifle range. I don't know why everyone is so shocked that I would have signed him up for this. I do hate guns in general, and do NOT want any in the house (although I have not been successful in persuading my husband to get rid of his father's guns and that really bothers me that we have them here). I have no problem with shooting in a controlled setting like a shooting range, though. I always enjoyed the shooting galleries as a kid, and used to be a good shot. Well, it looks like he inherited that trait. His first time, he hit the targets (all 15 shots). He passed the shooting portion of the badge test the first time out, so now he just needs to learn the rest of the info to get that badge. Oh, and the setting was absolutely GORGEOUS! It was a nice hike down a rocky hill to a stream in the woods. It was very picturesque. The archery range was also there, although we didn't get a chance to try that. We got there too late. That's something else I've always wanted to learn to do.

Again, it was a very nice experience. I am really looking forward to going again next year and so is my son. However, I'll know to pack a little lighter and I do hope that we get to stay a little closer to the bathrooms next time (the ones with the flushing toilets). I have nothing against the pit toilets, although it obviously isn't my first choice, but would prefer to have a little more privacy under the circumstances. :-) The cool breeze through the trees and the wildlife right behind our camp made up for anything and everything, though. You can see one of our visitors on the right. It was very serene and relaxing.

If you have a child with special needs, realize that the camp will not ensure that the child gets his meds on time or at all, nor will they cook the allergy-free foods for them or make sure they eat.  That is something that the child is responsible for, which is why I went along.  They are not liable!  If you want to send them, I do recommend that mom or dad go along.  It really is a good experience and there are some good potential bonding moments for you and your son.  The mess hall food at this camp is really good (for non-allergic people), it is clean (a health inspector runs it and is very meticulous), there are lots of things to do, and it's a nice camp all around.   Scouts drive hours to stay at this camp for a reason.