Last month our family went on an unplanned vacation. We were planning on staying at our destination for a day or two, but ended up staying there six days. A stomach bug hit our family hard. Traveling home was impossible. Each day we woke up someone new had the bug.
We had packed enough food for our family for two days, but definitely not for six days. I had to shop at an unfamiliar grocery store. Thankfully they had some items my children could eat. At one point I went to this blog to find recipes I could prepare for my kiddos. I quickly realized my staple recipes were not here. What was I going to do?
Our family did make it through the week. Looking on the bright side, it was a good thing that my children had a stomach bug because they didn't eat as much as they usually do. If they had... It's time to put these recipes on my blog, if for no other reason than they will be accessible to me when I need them away from home!
Pancakes
1 cup flour
3 tablespoons sugar
2 1/4 teaspoons baking powder
1/4 teaspoon salt
2 1/2 tablespoons oil
3/4 cup water
Mix all ingredients together in mixing bowl. Heat frying pan or griddle. Cook pancakes until tops are bubbly and the bottoms browned. Flip and cook. Serve.
Chocolate Cake
1 1/2 cups flour
1/4 cup unsweetened cocoa powder
1 teaspoon baking powder
1.4 teaspoon salt
3/4 cup brown sugar, firmly packed
1/3 cup oil
1 cup water
1/2 teaspoon vanilla
Preheat the oven to 350 degrees F and grease a 9-inch round or an 8-inch square pan. Sift the flour, cocoa, baking soda, and salt together into a bowl. Measure the brown sugar and add it. Stir the dry ingredients well. Mix the oil, water and vanilla together, then add them to the dry ingredients and stir just until all of the dry bits are wet. Turn the batter into the prepared pan. Bake the cake for 30 minutes or cupcakes for 15 minutes.
Taco Seasoning
1 1/2 teaspoons paprika
1 teaspoon chili powder (optional)
1/2 teaspoon oregano
1/2 teaspoon salt or garlic salt
Stir seasoning and 3/4 cup water into 1 pound browned and drained hamburger or turkey burger; simmer 10 minutes, stirring occasionally.
These recipes are my staple recipes because they require no "special" ingredients. I can find the ingredients anywhere and I can make them anywhere.
Do you have any recipes like this? We'd love you to share!
Saturday, August 13, 2011
Thursday, April 28, 2011
Fun for Siblings?
Having one child with a special dietary need is a challenge. Adding siblings to the mix with or without special dietary needs of their own can be extremely difficult.
Currently, in our home, there are many children with special dietary needs of varying natures. Some of these needs are life threatening and/or conflicting with special dietary needs of others in the house. One child has a severe milk protein allergy, which reacts with simple contact. This child also reacts to rice milk, almond milk, soy milk, etc... Two other children have milk allergies, but not as severe. Three children have no milk/dairy allergies, and one has a Vitamin D deficiency. Surprisingly, except for a few baby bottle mishaps, we've been able to keep everyone safe.
One child is allergic to many vegetables. But one he's NOT allergic to and LOVES, is one that another child IS allergic to, yet still loves. Both are toddlers and very skilled at throwing food on the floor and across the table.
When our son was first diagnosed with 30 food allergies, I was on a quest to find as many recipes as I could that our entire family could enjoy. Many items were removed from our home. Some still are today. But as time has passed, and more children come, I'm learning it's very difficult to juggle every one's diets and nutritional needs. The children who don't have special dietary needs may not eat the foods that our son can. One of our children has Asperger's and will only eat very specific foods, some of which his brother is allergic to.
Over time we've come up with some basic rules and routines in our home to keep people safe.
1. Only water is allowed in sippy cups and/or, which can be taken anywhere in the house.
2. Food and drinks are served at the table only.
3. One must ask an adult for permission before opening the refrigerator.
4. Children are positioned at the table based on their special dietary needs.
5. All snacks and meals are served by adults, at times with some assistance from children.
We've found it very helpful to have a raised table top and to store all food in cupboards above the counter. With so many young children, it's been wonderful to have a routine eating schedule of meals and snacks, so there is no munching in between.
There are still MANY Foods omitted from our home: eggs, oats, sweet potatoes, beef, pork, etc... But we do have milk and cheese, peanut butter, strawberries, and peas. At meal time I find myself cooking at least two meals, if not three, with a choice of vegetable and side dish. I've found that options keeps everyone happy.
We still have occasional meltdowns over broccoli and macaroni and cheese, but we've come a long way. When we have special treats, most often they are allergy friendly for everyone. At times we do have ice cream sundae nights though. Those allergic to dairy/milk usually get special allergy friendly chocolate bars or cookies. (Even alternative ice creams aren't safe for everyone. And one child in particular, suffering from sensory issues, will not eat anything cold.) It's a real juggling act.
As you can tell, the solutions we have come up with are very specific to our situation, and it may not be advisable to do things the same way we have done them, since every situation is unique. We may also find new challenges presenting themselves as the kids get older, and the potential changes in tastes and tolerances that come with growing up. Introducing new kids could also present new challenges, especially older kids who might not be so willing to give up on some favorite things out of concern for another's special dietary needs. The keys to continued success will be flexibility and quick adjustments before potential problems present themselves and get out of hand. Lots of communication, negotiation, and praise will be important components as well. As always, reducing the emphasis of food and eating as a central part of the day and shifting the focus to family fun and activities will aid in the process as well.
Now it's your turn:
1. How have you managed the challenge of keeping your child with special dietary needs safe while also being sensitive to the tastes and preferences of others (especially siblings) who may be asked to do without a favorite food? What was the most difficult thing about this and what has been the most rewarding aspect of trying to find this very delicate balance in your family?
2. Our experience is primarily with children ages 5 and under, so we are interested in learning how things change or have changed for your family's food needs as the children have grown older. Do things get easier because the kids can communicate more clearly and be kept safe more easily? Or, do tastes and preferences become stronger and less negotiable? How have you adapted to these changes and were there any surprises that you have encountered along the way?
One final note on posting comments: we appreciate all the input and feedback we receive in these discussions, and we invite you all to post as often as you would like, even if just to ask a question. We have found that especially lengthy comments (200 words or more) do not get posted in the comments section, due to some sort of technical issue with Blogger (we still love you Blogger!) So, if you have a lot to contribute on this or any other discussion in the future, you can either:
A) Divide it up into smaller posts or
B) Email it to renaemarienae@gmail.com and we will make sure your entire comment gets posted in the discussion.
Thanks again for all your support and feedback. We are learning a lot from all of you.
Currently, in our home, there are many children with special dietary needs of varying natures. Some of these needs are life threatening and/or conflicting with special dietary needs of others in the house. One child has a severe milk protein allergy, which reacts with simple contact. This child also reacts to rice milk, almond milk, soy milk, etc... Two other children have milk allergies, but not as severe. Three children have no milk/dairy allergies, and one has a Vitamin D deficiency. Surprisingly, except for a few baby bottle mishaps, we've been able to keep everyone safe.
One child is allergic to many vegetables. But one he's NOT allergic to and LOVES, is one that another child IS allergic to, yet still loves. Both are toddlers and very skilled at throwing food on the floor and across the table.
When our son was first diagnosed with 30 food allergies, I was on a quest to find as many recipes as I could that our entire family could enjoy. Many items were removed from our home. Some still are today. But as time has passed, and more children come, I'm learning it's very difficult to juggle every one's diets and nutritional needs. The children who don't have special dietary needs may not eat the foods that our son can. One of our children has Asperger's and will only eat very specific foods, some of which his brother is allergic to.
Over time we've come up with some basic rules and routines in our home to keep people safe.
1. Only water is allowed in sippy cups and/or, which can be taken anywhere in the house.
2. Food and drinks are served at the table only.
3. One must ask an adult for permission before opening the refrigerator.
4. Children are positioned at the table based on their special dietary needs.
5. All snacks and meals are served by adults, at times with some assistance from children.
We've found it very helpful to have a raised table top and to store all food in cupboards above the counter. With so many young children, it's been wonderful to have a routine eating schedule of meals and snacks, so there is no munching in between.
There are still MANY Foods omitted from our home: eggs, oats, sweet potatoes, beef, pork, etc... But we do have milk and cheese, peanut butter, strawberries, and peas. At meal time I find myself cooking at least two meals, if not three, with a choice of vegetable and side dish. I've found that options keeps everyone happy.
We still have occasional meltdowns over broccoli and macaroni and cheese, but we've come a long way. When we have special treats, most often they are allergy friendly for everyone. At times we do have ice cream sundae nights though. Those allergic to dairy/milk usually get special allergy friendly chocolate bars or cookies. (Even alternative ice creams aren't safe for everyone. And one child in particular, suffering from sensory issues, will not eat anything cold.) It's a real juggling act.
As you can tell, the solutions we have come up with are very specific to our situation, and it may not be advisable to do things the same way we have done them, since every situation is unique. We may also find new challenges presenting themselves as the kids get older, and the potential changes in tastes and tolerances that come with growing up. Introducing new kids could also present new challenges, especially older kids who might not be so willing to give up on some favorite things out of concern for another's special dietary needs. The keys to continued success will be flexibility and quick adjustments before potential problems present themselves and get out of hand. Lots of communication, negotiation, and praise will be important components as well. As always, reducing the emphasis of food and eating as a central part of the day and shifting the focus to family fun and activities will aid in the process as well.
Now it's your turn:
1. How have you managed the challenge of keeping your child with special dietary needs safe while also being sensitive to the tastes and preferences of others (especially siblings) who may be asked to do without a favorite food? What was the most difficult thing about this and what has been the most rewarding aspect of trying to find this very delicate balance in your family?
2. Our experience is primarily with children ages 5 and under, so we are interested in learning how things change or have changed for your family's food needs as the children have grown older. Do things get easier because the kids can communicate more clearly and be kept safe more easily? Or, do tastes and preferences become stronger and less negotiable? How have you adapted to these changes and were there any surprises that you have encountered along the way?
One final note on posting comments: we appreciate all the input and feedback we receive in these discussions, and we invite you all to post as often as you would like, even if just to ask a question. We have found that especially lengthy comments (200 words or more) do not get posted in the comments section, due to some sort of technical issue with Blogger (we still love you Blogger!) So, if you have a lot to contribute on this or any other discussion in the future, you can either:
A) Divide it up into smaller posts or
B) Email it to renaemarienae@gmail.com and we will make sure your entire comment gets posted in the discussion.
Thanks again for all your support and feedback. We are learning a lot from all of you.
Wednesday, March 23, 2011
60 Fun Without Food Easter Ideas
It's that time of year again. I'm not sure which holiday is more difficult-Christmas, Halloween, or Easter when it comes to special dietary needs. Coming up with Easter basket and tradition alternatives can be difficult. Easter was a pretty exciting day in my family growing up. The Easter Bunny would leave trails of jelly beans all over the house leading to where our Easter baskets were hidden. Our baskets were filled with candy and gifts of jewelry, music, and a few other miscellaneous items. I received a gift from my parents too. Most often it was a new item to play with outside.
After eating candy all morning and our annual Easter egg hunt with Dad, we'd get ready and head to my aunt's house for a HUGE buffet of meats, summer salads, fruit salads, veggies and desserts. There was always so much food. Sometimes we'd have another Easter egg hunt there. The eggs would be the ones we'd decorated a few days before.
There were a few variations in the holiday tradition, but the eggs, candy, and food were always present. Last year was our first Easter celebration since the kids' diagnoses. Click here to see the post from last year. This year we're changing things up a bit. And honestly, there are still many things to plan, BUT since Easter is only a month away, it's time for Fun Without Food's Easter Ideas!
Decorating Easter Eggs
Adam's egg and adhesive allergies are life threatening, so the tradition of decorating Easter eggs is a tough one for us. I've worked hard to come up with some alternatives. Here are some I really like. Some activities are not appropriate for younger children, others will bore older children. Click on links for instructions.
1. A Herd of (Plastic) Eggimals
2. Ballpoint Eggs
3. Papier-Mache Eggs (This project does require wheat flour, although I suppose you could use a different flour)
4. Foam Sticker Eggs (Oriental Trading has a lot of foam egg craft options)
5. Magic Color Scratch Eggs
6. Paint Your Own Ceramic Eggs (Ceramic Eggs can be replaced with wooden eggs.)
7. Stained Glass Easter Egg
8. Easter Egg Scissors Skills Project
9. Cotton Ball Easter Bunny Egg
10. Yarn Balloon Egg
11. Pop Up Eggs
12. For really young children print out template for Easter Egg Scissors Skills Project and just have children color or paint the egg, and/or add stickers.
If you have other ideas PLEASE share!
Easter Egg Fillers
The Easter Egg Hunt is one of the most favorite events of the day around here. Before special dietary needs were introduce to the family, we stuffed plastic eggs with candy. Now we use non food Easter Egg Fillers. Here are some ideas that we've used and plan to use in the future. Some require a larger plastic egg.
1. Lego or Lego Duplo Pieces
2. Finger Puppets
3. Miniature Dinosaur and Animal Figurines
4. Magnets
5. Beads
6. Matchbox or Hot Wheels Cars
7. Jewelry
8. Hair Barrettes & Bows
9. Barbie Accessories
10. Mr. Potato Head Pieces
12. Crayons
13. Stickers
14. Miniature Play Do containers
15. Stamps
16. Scrapbooking Accessories
17. Chalk
18. Fisher Price Little People or Imaginex Accessories
19. Mini Paint Containers
20. Cash or Coins
21. Playmobile or Action Figure Accessories
22. Puzzle Pieces
23. Seeds
24. Shoelaces or socks
Obviously Oriental Trading, along with many other stores have plenty of little toys that fit in plastic Easter eggs, BUT I'm one to prefer toys or items that the kids will actually use for a long time and won't break within 24 hours. We color code the eggs for each child so they will know which ones are their eggs.
What do you put in your Easter Eggs? PLEASE share any other ideas that you have!
There are many websites about Easter Craft Ideas, so I don't want to go into much detail about that, but besides crafts, Easter Eggs, Easter Egg Hunts, Easter baskets, and FOOD, how do you celebrate the holiday? How do you have fun without food? Do you celebrate the religious aspect of the holiday? How so?
Since having children Easter is a two part celebration in our home. The day before Easter our family celebrates the secular part of the holiday. We call it the Day of the Easter Bunny. Then on Sunday, we devote the day to the religious aspect of the holiday. I've always directed the choir in my congregation, up until this year. My 2 1/2 year old has also been a baby up until this year. Unfortunately because of safety risks, we're having to stay home from religious services. This is really upsetting to me, but I'm working hard to find other ways to make the day special.
Some Fun Without Food Secular Celebration Ideas include:
1. (Non Food) Easter Egg Hunt
2. Relay Races and Games
3. Planting a tree of flowers
4. Learn how to weave a basket
5. Visit a farm where there are new baby animals
6. Nature walk or hike
7. Signs of Spring Scavenger Hunt
8. Easter Crafts
9. Make & Send Easter Cards to Family & Friends
10. Go shopping for spring and summer wardrobes
11. Visit the Easter Bunny at your local Mall
12. Deliver flowers to friends and neighbors
Some Fun Without Food Religious Celebration Ideas include:
1. Attend religious services (Make sure they are safe for those with special dietary needs!)
2. Attend or participate in a performance of an Easter Oratorio
3. Read scripture passages about the life of Jesus Christ, His miracles, and/or events leading up to and after His Crucifixion.
4. Watch a movie about the life of Jesus Christ, His Crucifixion, and/or His Resurrection.
5. Write in a journal
6. Religious Easter Crafts
7. Visit a sacred place or religious historical site
8. Write letters of gratitude to loved ones
9. Listen to and/or sing hymns of praise and/or other sacred music
10. Pray
11. Create and play trivia games about the religious events surrounding the Easter holiday.
12. Serve those in need.
What are some fun without food secular and/or religious celebration ideas that your family has?
We hope you have a very fun, safe, and happy Easter holiday!
After eating candy all morning and our annual Easter egg hunt with Dad, we'd get ready and head to my aunt's house for a HUGE buffet of meats, summer salads, fruit salads, veggies and desserts. There was always so much food. Sometimes we'd have another Easter egg hunt there. The eggs would be the ones we'd decorated a few days before.
There were a few variations in the holiday tradition, but the eggs, candy, and food were always present. Last year was our first Easter celebration since the kids' diagnoses. Click here to see the post from last year. This year we're changing things up a bit. And honestly, there are still many things to plan, BUT since Easter is only a month away, it's time for Fun Without Food's Easter Ideas!
Decorating Easter Eggs
Adam's egg and adhesive allergies are life threatening, so the tradition of decorating Easter eggs is a tough one for us. I've worked hard to come up with some alternatives. Here are some I really like. Some activities are not appropriate for younger children, others will bore older children. Click on links for instructions.
1. A Herd of (Plastic) Eggimals
2. Ballpoint Eggs
3. Papier-Mache Eggs (This project does require wheat flour, although I suppose you could use a different flour)
4. Foam Sticker Eggs (Oriental Trading has a lot of foam egg craft options)
5. Magic Color Scratch Eggs
6. Paint Your Own Ceramic Eggs (Ceramic Eggs can be replaced with wooden eggs.)
7. Stained Glass Easter Egg
8. Easter Egg Scissors Skills Project
9. Cotton Ball Easter Bunny Egg
10. Yarn Balloon Egg
11. Pop Up Eggs
12. For really young children print out template for Easter Egg Scissors Skills Project and just have children color or paint the egg, and/or add stickers.
If you have other ideas PLEASE share!
Easter Egg Fillers
The Easter Egg Hunt is one of the most favorite events of the day around here. Before special dietary needs were introduce to the family, we stuffed plastic eggs with candy. Now we use non food Easter Egg Fillers. Here are some ideas that we've used and plan to use in the future. Some require a larger plastic egg.
1. Lego or Lego Duplo Pieces
2. Finger Puppets
3. Miniature Dinosaur and Animal Figurines
4. Magnets
5. Beads
6. Matchbox or Hot Wheels Cars
7. Jewelry
8. Hair Barrettes & Bows
9. Barbie Accessories
10. Mr. Potato Head Pieces
12. Crayons
13. Stickers
14. Miniature Play Do containers
15. Stamps
16. Scrapbooking Accessories
17. Chalk
18. Fisher Price Little People or Imaginex Accessories
19. Mini Paint Containers
20. Cash or Coins
21. Playmobile or Action Figure Accessories
22. Puzzle Pieces
23. Seeds
24. Shoelaces or socks
Obviously Oriental Trading, along with many other stores have plenty of little toys that fit in plastic Easter eggs, BUT I'm one to prefer toys or items that the kids will actually use for a long time and won't break within 24 hours. We color code the eggs for each child so they will know which ones are their eggs.
What do you put in your Easter Eggs? PLEASE share any other ideas that you have!
Other Way of Celebrating
There are many websites about Easter Craft Ideas, so I don't want to go into much detail about that, but besides crafts, Easter Eggs, Easter Egg Hunts, Easter baskets, and FOOD, how do you celebrate the holiday? How do you have fun without food? Do you celebrate the religious aspect of the holiday? How so?
Since having children Easter is a two part celebration in our home. The day before Easter our family celebrates the secular part of the holiday. We call it the Day of the Easter Bunny. Then on Sunday, we devote the day to the religious aspect of the holiday. I've always directed the choir in my congregation, up until this year. My 2 1/2 year old has also been a baby up until this year. Unfortunately because of safety risks, we're having to stay home from religious services. This is really upsetting to me, but I'm working hard to find other ways to make the day special.
Some Fun Without Food Secular Celebration Ideas include:
1. (Non Food) Easter Egg Hunt
2. Relay Races and Games
3. Planting a tree of flowers
4. Learn how to weave a basket
5. Visit a farm where there are new baby animals
6. Nature walk or hike
7. Signs of Spring Scavenger Hunt
8. Easter Crafts
9. Make & Send Easter Cards to Family & Friends
10. Go shopping for spring and summer wardrobes
11. Visit the Easter Bunny at your local Mall
12. Deliver flowers to friends and neighbors
Some Fun Without Food Religious Celebration Ideas include:
1. Attend religious services (Make sure they are safe for those with special dietary needs!)
2. Attend or participate in a performance of an Easter Oratorio
3. Read scripture passages about the life of Jesus Christ, His miracles, and/or events leading up to and after His Crucifixion.
4. Watch a movie about the life of Jesus Christ, His Crucifixion, and/or His Resurrection.
5. Write in a journal
6. Religious Easter Crafts
7. Visit a sacred place or religious historical site
8. Write letters of gratitude to loved ones
9. Listen to and/or sing hymns of praise and/or other sacred music
10. Pray
11. Create and play trivia games about the religious events surrounding the Easter holiday.
12. Serve those in need.
What are some fun without food secular and/or religious celebration ideas that your family has?
We hope you have a very fun, safe, and happy Easter holiday!
Sunday, March 20, 2011
Special Dietary Needs and Autism Spectrum Disorders
Before I had children, I was of the mentality that a child eats what's put on the table or they go without. Eventually they will get hungry enough and give in. Then my son Owen was born. After a week he refused to breastfeed. I pumped for six weeks and then switched to formula. With every bottle we would fight him it seemed. At times he had projectile vomiting.
As he grew in age, and transitioned to solids, the challenge of getting him to eat became harder. The first two foods I introduced to him, carrots and peaches, seemed to make him miserable and sick. I called the doctor's office, frantic, questioning my abilities as a mother. Why couldn't I get my son to eat?
Finally at 8 months, we introduced him to Yo Baby Yogurt, per our pediatrician's recommendation. He hadn't been gaining weight. Thankfully he loved it. There were VERY few foods we could get him to eat. For the longest time it seemed that Owen lived off of this yogurt. On occasion he would eat something else, but it was rare. As he became mobile, we resorted to sticking snacks in his toy dump trucks, hoping he would see them and eat them. It worked at times.
By the age of two, Owen would eat whole wheat pasta with sauce, grilled cheese sandwiches, homemade breads, crackers, pizza, and a few other items. Fruits and vegetables were rare, in fact I believe Owen has only eaten vegetables less than a handful of times throughout his entire existence. Still, it seemed Owen would eat one day, and then eat nothing for three days. This pattern seemed endless.
It was at age two that we learned Owen had allergies/intolerances to dairy, wheat, pork, and beef. I was devastated, his entire diet consisted of foods that made him sick. Slowly, I found alternatives that he would eat, and he became free of the allergens. He became a different child, although his eating habits continued to challenge us as parents. We found more allergies/intolerances.
Between the ages of two and three, Owen became extremely particular about his food. Everything he ate was a shade of brown, ranging from cream colored to dark chocolate. Most foods were crunchy. They had to be a specific name brand, or he wouldn't touch them. Thankfully by the age of three, Owen grew out of his wheat allergy/intolerance and that provided us with many more options. Still his eating habits worsened.
When Owen turned four, we said enough was enough. We had learned long ago that we couldn't say eat what's in front of you or go without, because Owen needed to gain weight. Instead we decided that for one week we would have Owen take one bite of one item on his plate, that we were eating, and then he could have whatever he wanted.
Our experiment went horribly wrong. Owen screamed for 90 minutes. He then decided he would take a bite. As the tiniest piece of food touched his tongue he would gag to the point of vomiting. This same scenario continued for a week straight. We gave up and realized something was very wrong.
After making a list of concerns regarding Owen, we took them to our pediatrician. We made a special appointment with him, without children present. It was then that he referred Owen to a Developmental Pediatrician, explaining that we could be looking at something as minor as Obsessive Compulsive Disorder or as serious as Autism.
On February 16th of this year, Owen was diagnosed with an Autism Spectrum Disorder. An Autism Spectrum Disorder comes with a completely different kind of special dietary needs. I remember one night going to the grocery store at 11:30 PM because I realized we were out of foods Owen would eat. My cart was filled with Wegman's Berry Corn Crunch, Tyson's Fun Nuggets, Jif Peanut Butter, Smuckers Seedless Strawberry Jam, Ritz Crackers, and Freihofer's White Bread. I felt embarrassed shopping so late at night for such items. I explained to the cashier apologetically that my son had an Autism Spectrum Disorder and these were the only foods he would eat.
His response was a surprise. He nodded with a huge grin, and said knowingly,
"I understand COMPLETELY. My sister has an Autism Spectrum Disorder."
We continued our conversation. It turns out his sister will only eat foods that are green in color. He shared specific name brands, etc...
It turned a very stressful situation into a comforting conversation.
A couple months ago I was told about the movie, Adam. It's about a young single adult with an Autism Spectrum Disorder. I remember watching the scene where it showed his freezer and cupboards filled with the same three items that he ate day after day. Part of me laughed and cried all at once. There were a couple other scenes that directly related to food that caused the same reaction.
There are many aspects of Autism Spectrum Disorders that are very difficult at times, but personally, I feel the diet is the hardest. Owen will starve himself for three days before he'd ever consider trying something new, and then he still wouldn't try it.
The sight of food causes him stress. I honestly believe if he could avoid food all together he would.
And then comes the controversy of the gluten free, casein free diet. There are other versions of it too. Some doctors recommend it. Some parents swear by it. Others believe they have proof that it makes no difference. Many who don't understand the prescription of it and it's possible benefits think parents of Autism Spectrum Disorder kids are crazy.
Meanwhile parents work endlessly trying to get their Autism Spectrum child to eat.
Questions:
How did you "discover" the special dietary needs of your child? How did you handle the process of finding things that were, (1) safe and (2) appealing to your child? What has been the hardest part about this process for you? What has been the biggest surprise?
If you have a child with an Autism Spectrum Disorder, please share your story, especially as it relates to food issues. What has your experience been with adjusting your child's food intake to modify his or her health/moods/behaviors? What has worked for you? What is still challenging?
As he grew in age, and transitioned to solids, the challenge of getting him to eat became harder. The first two foods I introduced to him, carrots and peaches, seemed to make him miserable and sick. I called the doctor's office, frantic, questioning my abilities as a mother. Why couldn't I get my son to eat?
Finally at 8 months, we introduced him to Yo Baby Yogurt, per our pediatrician's recommendation. He hadn't been gaining weight. Thankfully he loved it. There were VERY few foods we could get him to eat. For the longest time it seemed that Owen lived off of this yogurt. On occasion he would eat something else, but it was rare. As he became mobile, we resorted to sticking snacks in his toy dump trucks, hoping he would see them and eat them. It worked at times.
By the age of two, Owen would eat whole wheat pasta with sauce, grilled cheese sandwiches, homemade breads, crackers, pizza, and a few other items. Fruits and vegetables were rare, in fact I believe Owen has only eaten vegetables less than a handful of times throughout his entire existence. Still, it seemed Owen would eat one day, and then eat nothing for three days. This pattern seemed endless.
It was at age two that we learned Owen had allergies/intolerances to dairy, wheat, pork, and beef. I was devastated, his entire diet consisted of foods that made him sick. Slowly, I found alternatives that he would eat, and he became free of the allergens. He became a different child, although his eating habits continued to challenge us as parents. We found more allergies/intolerances.
Between the ages of two and three, Owen became extremely particular about his food. Everything he ate was a shade of brown, ranging from cream colored to dark chocolate. Most foods were crunchy. They had to be a specific name brand, or he wouldn't touch them. Thankfully by the age of three, Owen grew out of his wheat allergy/intolerance and that provided us with many more options. Still his eating habits worsened.
When Owen turned four, we said enough was enough. We had learned long ago that we couldn't say eat what's in front of you or go without, because Owen needed to gain weight. Instead we decided that for one week we would have Owen take one bite of one item on his plate, that we were eating, and then he could have whatever he wanted.
Our experiment went horribly wrong. Owen screamed for 90 minutes. He then decided he would take a bite. As the tiniest piece of food touched his tongue he would gag to the point of vomiting. This same scenario continued for a week straight. We gave up and realized something was very wrong.
After making a list of concerns regarding Owen, we took them to our pediatrician. We made a special appointment with him, without children present. It was then that he referred Owen to a Developmental Pediatrician, explaining that we could be looking at something as minor as Obsessive Compulsive Disorder or as serious as Autism.
On February 16th of this year, Owen was diagnosed with an Autism Spectrum Disorder. An Autism Spectrum Disorder comes with a completely different kind of special dietary needs. I remember one night going to the grocery store at 11:30 PM because I realized we were out of foods Owen would eat. My cart was filled with Wegman's Berry Corn Crunch, Tyson's Fun Nuggets, Jif Peanut Butter, Smuckers Seedless Strawberry Jam, Ritz Crackers, and Freihofer's White Bread. I felt embarrassed shopping so late at night for such items. I explained to the cashier apologetically that my son had an Autism Spectrum Disorder and these were the only foods he would eat.
His response was a surprise. He nodded with a huge grin, and said knowingly,
"I understand COMPLETELY. My sister has an Autism Spectrum Disorder."
We continued our conversation. It turns out his sister will only eat foods that are green in color. He shared specific name brands, etc...
It turned a very stressful situation into a comforting conversation.
A couple months ago I was told about the movie, Adam. It's about a young single adult with an Autism Spectrum Disorder. I remember watching the scene where it showed his freezer and cupboards filled with the same three items that he ate day after day. Part of me laughed and cried all at once. There were a couple other scenes that directly related to food that caused the same reaction.
There are many aspects of Autism Spectrum Disorders that are very difficult at times, but personally, I feel the diet is the hardest. Owen will starve himself for three days before he'd ever consider trying something new, and then he still wouldn't try it.
The sight of food causes him stress. I honestly believe if he could avoid food all together he would.
And then comes the controversy of the gluten free, casein free diet. There are other versions of it too. Some doctors recommend it. Some parents swear by it. Others believe they have proof that it makes no difference. Many who don't understand the prescription of it and it's possible benefits think parents of Autism Spectrum Disorder kids are crazy.
Meanwhile parents work endlessly trying to get their Autism Spectrum child to eat.
Questions:
How did you "discover" the special dietary needs of your child? How did you handle the process of finding things that were, (1) safe and (2) appealing to your child? What has been the hardest part about this process for you? What has been the biggest surprise?
If you have a child with an Autism Spectrum Disorder, please share your story, especially as it relates to food issues. What has your experience been with adjusting your child's food intake to modify his or her health/moods/behaviors? What has worked for you? What is still challenging?
Monday, March 14, 2011
Irrational Versus Rational Response
Directions: The link below is a blog post discussing the Florida parent protests against procedures put in place to protect a child with a life threatening peanut allergy. Please read it and then be prepared to join us in considering some ways to respond to this situation or a similar situation that you may face with a child who has special dietary needs.
http://allergickid.blogspot.com/2011/03/todays-lesson-hate-and-intolerance.html
Here are some initial responses and our attempts to sort them out.
1. This isn't fair! Why do people have SUCH a hard time understanding food allergies?
2. It's not fair to the other kids in the class? How about life being fair for the kid with the allergy?
3. Why is it so hard for people to accommodate people with food allergies or any special dietary need for that matter? It's JUST food! Have you taken notice of our obesity epidemic?
4. Since when is school focused around food? I didn't know learning math or reading skills required peanut butter!
5. Why must a parent of a child with food allergies need to fight so much for the safety of their child?
6. How can people be so mean and so hurtful?
7. Do you think a parent asks for their child to have food allergies?
8. Boy, do I feel good about homeschooling my kids!
In addition to our emotional response and outrage, we want to keep thinking about this and try to come up with more rational responses. This situation is completely wrong, but the first priority must always be keeping your child safe. The question is: if this happened to your child, what would be the best way to respond?
A few thoughts (and a quick disclaimer first)
Disclaimer: we do not know the entire story. We don't know how the school has responded to this- Have any statements been issued? Any efforts made to educate the parents and children? That might provide answers to some of our thoughts below:
1. The parents of the little girl with the peanut allergy clearly have legal rights here. They pulled her from school apparently due to threats made by other parents, but they have every right to keep that kid in her school. That said, safety has to come first, so their actions are understandable.
2. The cause to stay in school is important, because it would definitely set a bad precedent for other kids in other school districts if no one stands up and fights. The burden would seem to be on the school to: provide this kid with the services in her educational plan, provide safety for each and every student, and protect the confidential educational and health information of each student from being leaked to the public. If the school district is negligent in this regard, legal action could easily be pursued and a pretty strong case could be made that they are not doing this.
3. On a public policy level, it would be interesting to see if any steam could be gathered behind some legislation that would treat someone who harms or threatens to harm someone with a life-threatening allergy as a hate crime or something to that effect. I would hate to think that someone would have to be hurt in order for something to happen, but unfortunately, that seems to be the only way something like this gets done.
4. The parents of the other first graders have the right to protest things that they think are violating their children's rights to adequate education. However, wouldn't it serve everyone best if the school hosted a public forum about this issue, to educate about the real dangers of food allergies? They could invite one or more allergy experts to talk about the reality of the threat of peanuts to this little girl, and open up the floor for questions. A little awareness and understanding never hurts in a situation like this. Also, it would be of interest to find out if these parents voiced their concerns to faculty and administrators within the school before the protests. What was the school's response?
5. It might be helpful to publicize stories of school districts or individual classrooms in which reasonable accommodations to protect a student have been made successfully, to illustrate that this can be done, and no one would really miss out on anything. In fact, isn't there potential for a lot to be gained in a classroom in which tolerance and understanding are practiced on a daily basis?
What do you think? Are you familiar with any "success stories" that are comparable to this situation? How would you deal with the type of opposition that these folks face in Florida?
http://allergickid.blogspot.com/2011/03/todays-lesson-hate-and-intolerance.html
Here are some initial responses and our attempts to sort them out.
1. This isn't fair! Why do people have SUCH a hard time understanding food allergies?
2. It's not fair to the other kids in the class? How about life being fair for the kid with the allergy?
3. Why is it so hard for people to accommodate people with food allergies or any special dietary need for that matter? It's JUST food! Have you taken notice of our obesity epidemic?
4. Since when is school focused around food? I didn't know learning math or reading skills required peanut butter!
5. Why must a parent of a child with food allergies need to fight so much for the safety of their child?
6. How can people be so mean and so hurtful?
7. Do you think a parent asks for their child to have food allergies?
8. Boy, do I feel good about homeschooling my kids!
In addition to our emotional response and outrage, we want to keep thinking about this and try to come up with more rational responses. This situation is completely wrong, but the first priority must always be keeping your child safe. The question is: if this happened to your child, what would be the best way to respond?
A few thoughts (and a quick disclaimer first)
Disclaimer: we do not know the entire story. We don't know how the school has responded to this- Have any statements been issued? Any efforts made to educate the parents and children? That might provide answers to some of our thoughts below:
1. The parents of the little girl with the peanut allergy clearly have legal rights here. They pulled her from school apparently due to threats made by other parents, but they have every right to keep that kid in her school. That said, safety has to come first, so their actions are understandable.
2. The cause to stay in school is important, because it would definitely set a bad precedent for other kids in other school districts if no one stands up and fights. The burden would seem to be on the school to: provide this kid with the services in her educational plan, provide safety for each and every student, and protect the confidential educational and health information of each student from being leaked to the public. If the school district is negligent in this regard, legal action could easily be pursued and a pretty strong case could be made that they are not doing this.
3. On a public policy level, it would be interesting to see if any steam could be gathered behind some legislation that would treat someone who harms or threatens to harm someone with a life-threatening allergy as a hate crime or something to that effect. I would hate to think that someone would have to be hurt in order for something to happen, but unfortunately, that seems to be the only way something like this gets done.
4. The parents of the other first graders have the right to protest things that they think are violating their children's rights to adequate education. However, wouldn't it serve everyone best if the school hosted a public forum about this issue, to educate about the real dangers of food allergies? They could invite one or more allergy experts to talk about the reality of the threat of peanuts to this little girl, and open up the floor for questions. A little awareness and understanding never hurts in a situation like this. Also, it would be of interest to find out if these parents voiced their concerns to faculty and administrators within the school before the protests. What was the school's response?
5. It might be helpful to publicize stories of school districts or individual classrooms in which reasonable accommodations to protect a student have been made successfully, to illustrate that this can be done, and no one would really miss out on anything. In fact, isn't there potential for a lot to be gained in a classroom in which tolerance and understanding are practiced on a daily basis?
What do you think? Are you familiar with any "success stories" that are comparable to this situation? How would you deal with the type of opposition that these folks face in Florida?
Saturday, March 12, 2011
Some of My VERY Favorite Dinner Recipes
I LOVE to cook and bake. But I HATE spending lots of money on ingredients. When our kids were diagnosed with food allergies our grocery bill tripled. Living gluten free, dairy free, egg free, and so many other "frees" was extremely frustrating. I don't understand why children with allergies and other special dietary needs don't get any type of disability. Just the cost of feeding them is enough to break the bank. After two months of insanely high priced grocery shopping trips I was determined to find recipes for meals that were still "free" of all of the ingredients we needed to avoid, but not expensive. I hosted a recipe contest on facebook where I challenged friends to find recipes that were safe for our family. My grandmother started saving me all the magazines she subscribes to. I searched every one looking for recipes that would work. I also purchased a few special diet cook books, but most of the recipes were too expensive to make and called for ingredients I didn't even know existed, or they were free of one or two things, but then required the use of other things I couldn't use.
A year later, I have compiled an entire binder full of recipes that are safe and inexpensive for our family to eat. I still search through every magazine I see, but for the most part we eat very well. There are only a few ingredients that I need to buy in the health food section of the grocery store.
I keep meaning to share some of our favorite dinner recipes. Today is the day! I hope you enjoy! They are delicious and can be altered easily to fit any diet. The best thing is that they don't require "special" ingredients!
All the recipes are gluten free, dairy free, egg free, and... They are free of A LOT of stuff!
Chicken Enchiladas with Green Salsa
(This recipe does call for cheese and sour cream, but we leave it out, and offer it on the side to those who are able to eat it. We use a fryer chicken instead of a rotisserie chicken to omit possible allergens. You can substitute the green salsa for any kind of salsa if you'd like or eat it without, which we've done too!)
A year later, I have compiled an entire binder full of recipes that are safe and inexpensive for our family to eat. I still search through every magazine I see, but for the most part we eat very well. There are only a few ingredients that I need to buy in the health food section of the grocery store.
I keep meaning to share some of our favorite dinner recipes. Today is the day! I hope you enjoy! They are delicious and can be altered easily to fit any diet. The best thing is that they don't require "special" ingredients!
All the recipes are gluten free, dairy free, egg free, and... They are free of A LOT of stuff!
Chicken Enchiladas with Green Salsa
Ingredients
- 4 tablespoons canola oil
- 2 small zucchini, diced
- 1 small red onion, chopped
- 1/2 cup corn kernels (from 1 ear, or frozen and thawed)
- 1 2- to 2 1/2 pound rotisserie chicken, meat shredded
- 1 1/2 cups grated Monterey Jack (6 ounces)
- kosher salt and black pepper
- 12 6-inch corn tortillas
- 1 pound tomatillos, papery husks removed
- 1 jalapeño, seeded
- 1 cup fresh cilantro
- 1 tablespoon fresh lime juice
- 1/2 cup sour cream (optional)
Directions
- Heat oven to 400° F. Heat 1 tablespoon of the oil in a medium skillet over medium-high heat.
- Add zucchini, onion, and corn and cook, stirring, until onion begins to soften, 3 to 5 minutes.
- Transfer vegetables to a large bowl. Add chicken, Monterey Jack, 1 teaspoon salt, and ¼ teaspoon pepper. Mix to combine.
- Wipe out the skillet and heat remaining oil over medium heat. Cook each tortilla until softened, 10 to 15 seconds per side. Transfer to a paper towel–lined plate.
- Divide chicken mixture among the tortillas, roll them up, and place them in a baking dish, seam-side down. Bake until heated through, 8 to 10 minutes.
- Meanwhile, in a food processor, pulse the tomatillos, jalapeño, cilantro, lime juice, and ½ teaspoon salt until finely chopped. Serve the enchiladas with the salsa and sour cream, if using.
Chicken with Acorn Squash and Tomatoes
Ingredients
- 1 small acorn squash (about 1 1/2 pounds), halved, seeded, and sliced 1/4 inch thick
- 1 pint grape tomatoes, halved
- 4 cloves garlic, sliced
- 3 tablespoons olive oil
- kosher salt and black pepper
- 4 6-ounce boneless, skinless chicken breasts
- 1/2 teaspoon ground coriander
- 2 tablespoons chopped fresh oregano
Directions
- Heat oven to 425° F.
- On a large rimmed baking sheet, toss the squash, tomatoes, and garlic with 2 tablespoons of the oil, ½ teaspoon salt, and ¼ teaspoon pepper.
- Roast the vegetables until the squash is tender, 20 to 25 minutes.
- Meanwhile, heat the remaining tablespoon of oil in a large skillet over medium heat.
- Season the chicken with the coriander, ½ teaspoon salt, and ¼ teaspoon pepper. Cook until golden brown and cooked through, 6 to 7 minutes per side.
- Serve the chicken with the squash and tomatoes and sprinkle with the oregano.
Columbian Chicken and Potato Soup
(I use 2 cups frozen corn kernels instead of cobs, omit celery and onion, and serve lime juice on the side.)
Ingredients
- 4 cups low-sodium chicken broth
- 1 pound boneless, skinless chicken thighs (about 4)
- 4 frozen corn-on-the-cob pieces (sometimes called “cobbettes”)
- 1 tablespoon olive oil
- 1 small onion, thinly sliced
- 1 celery stalk, thinly sliced
- 4 garlic cloves, thinly sliced
- 2 medium russet potatoes (about 1 pound), peeled and cut into 1-inch pieces
- 2 tablespoons fresh lime juice, plus wedges for serving
- 1/4 teaspoon dried oregano
- kosher salt and black pepper
- cut-up avocado, fresh cilantro sprigs, and capers, for serving
Directions
- In a large saucepan or Dutch oven, combine the chicken broth and 1 cup water and bring to a boil. Add the chicken and corn and simmer until the chicken is cooked through, 10 to 12 minutes.
- Remove the chicken and corn from the saucepan and reserve.
- Strain the cooking liquid into a large bowl or measuring cup and reserve.
- Wipe out the saucepan and heat the oil over medium heat. Add the onion, celery, and garlic and cook, stirring occasionally, until beginning to soften, 2 to 3 minutes. Add the potatoes and the reserved cooking liquid and bring to a boil. Reduce heat and simmer until the pota-toes are cooked through, 15 to 20 minutes.
- Meanwhile, shred the chicken and cut the corn pieces into 1-inch-thick rounds. Return the chicken and corn to the soup. Add the lime juice, oregano, ½ teaspoon salt, and ¼ teaspoon pepper and cook until heated through, about 1 minute. Serve the soup with the avocado, cilantro, capers, and lime wedges
Homemade Taco Seasoning Packet Replacement
I'm not sure where this recipe came from, it was given to me by a friend, but it has been a LIFE SAVER! There are only four ingredients, no preservatives, no sugar, no msg, etc.
(We omit chili powder and add 1/4 tsp. red pepper flakes because of Adam's allergies.)
1 packet
1 1/2 teaspoon paprika
1 teaspoon chili powder
1/2 teaspoon oregano
1/2 teaspoon salt or garlic salt
1. Stir seasoning and 3/4 cup water into 1 pound browned and drained hamburger or any other meat, simmer 10 minutes, stirring occasionally.
Kale With Roasted Peppers and Olives
(We use red wine vinegar instead of balsamic vinegar and black olives instead of Kalamata olives. Any type of pepper can be used.)
Ingredients
- 2 large bunches kale
- 2 tablespoons olive oil
- 2 cloves garlic, thinly sliced
- 2 teaspoons sugar
- 1 teaspoon salt
- 12 Kalamata olives, pitted and chopped
- 1 4-ounce jar roasted red peppers
- 2 tablespoons aged balsamic vinegar
Directions
- Cut the kale into bite-size pieces, removing any tough stems. Rinse and shake dry.
- Warm the oil and garlic in a large stockpot over medium-high heat. Remove the garlic as soon as it browns (don't let it burn). Add the kale and stir-fry 5 minutes. Add 1/4 cup water, cover, and cook 8 to 10 minutes or until tender. Uncover and add the sugar, salt, olives, and peppers. Cook over medium-high heat until the liquid has evaporated.
- Spoon into a serving dish; scatter the garlic over the top. Drizzle with the balsamic vinegar. Serve warm or at room temperature.
All recipes and images are from Real Simple magazine, except for the taco seasoning. I hope you enjoy!
What is your favorite inexpensive special dietary needs recipe? We'd love for you to share it in the comments section of the blog!
What is your favorite inexpensive special dietary needs recipe? We'd love for you to share it in the comments section of the blog!
Thursday, March 10, 2011
I Want to Quit!
I received a call from school today. Owen's teacher noticed a rash on his face and tummy. The nurse called to see if I wanted her to administer Benadryl. I explained that Owen has had the rash for four days now. It had appeared better this morning and so I wasn't as worried, hence why I sent him to school.
When Owen returned home the rash had definitely worsened. After nap time it had spread to his arms and legs. Originally I thought perhaps it was Roseola or maybe Fifth Disease. Owen had been sick. I was wrong. It turns out, Owen had broken out in hives. He was having an allergic reaction to the antibiotics the doctor was giving him. This is what I learned at 4:30 PM today at his doctor's appointment.
ANOTHER ALLERGY.
I took Baby L to his Communications Disorders Unit appointment on February 28th. As I explained some of Baby L's symptoms to the CDU Specialist, she proclaims, "It sounds like he may have food allergies." Just those two words, "food allergies" seem to haunt me EVERYWHERE I go, with EVERY CHILD I care for, whether they are my own biological children or foster/adoptive children. How does that happen?
Lydia broke out in hives during her last antibiotic treatment as well, not because of the antibiotic, but because it was flavored with orange, one of her food allergies. When I smelled the prescription I knew it would be trouble. I called the pharmacy and asked for the ingredients. They were unable to tell me the ingredients for the flavoring, other than to say it was orange flavoring. Of course you can't take back antibiotics and get new ones. So I took the chance and gave them to her. Thankfully it was only a minor reaction, because the orange content was so small, but still... ENOUGH!
Baby L started steroid nebulizer treatments two or three months ago. I don't remember specifically. The day he took his first treatment was the same day I gave him Tylenol for the first time. About 4 hours after the first dose of Tylenol, I went to changed him and realized he had broken out in hives that were starting to blister. They were all over his front and back, neck and spreading to his head. Immediately I called the doctor, administered Benadryl and waited. I took pictures of his back and tummy, just so I could believe what I was seeing.
Fast forward a couple of months and I decided to administer Tylenol a second time to see if in fact that was what caused the reaction. Sure enough, as I stripped him at his doctor's appointment that very afternoon, only about an hour after the dose, he was covered in hives.
Benadryl is a staple in our home. Just yesterday Adam received a dose. He had somehow gotten a hold of Owen's Life cereal. Thankfully there was no milk in it, or else we would have definitely been in far more trouble, but Adam is allergic to oats, which is one of the first ingredients. Adam doesn't understand his food allergies. He's two years old. As I immediately move the cereal away from him, he exclaims,
"Mommy! Yummy Life!" Trying to stay calm I hold him and explain that life is "danger" as we put it in our home. I tell him that it makes him sick. This is on my way to the medicine cabinet to grab the Benadryl. Adam sees is and shouts,
"YAY! PINK MEDICINE!"
There is something wrong with this picture. Adam LOVES Benadryl. I'm sure it makes him feel great, but I worry that he likes it so much there may come a time where he does really stupid things just to get some.
Just a week before, Adam had another dose of Benadryl because he got a hold of a sticker that was sent home on one of Owen's papers from preschool. Seriously, does anyone else live like this?
I am exhausted. I want to quit. One can't quit being a Mom of a child with food allergies, or any other special dietary need or special medical need, but sometimes, on days like today, I really wish I could. What I would give to just take it all away. I forget what it's like to live a life free of food, medicine, and an adhesive allergy.
The highlight of my day was finding out that the special needs preschool in our town is officially accepting Adam on a trial basis of one hour, two days a week next fall. They won't accept him as a full time student or as a part time student. It's too dangerous for him and his allergies. The school would have to rearrange a whole room for Adam and eliminate many of the activities they do throughout the day. Teachers feel it's not fair to the other children, to limit them so much.
What about Adam? He doesn't even get a choice in what's fair for him. His life isn't fair. It is so sad to me that Adam's trial to preschool is the highlight of the day. I am grateful, don't get me wrong. We were pretty sure we would have to home school him, until our pediatrician, the medical director of the special needs school, arranged a meeting with the head administrator, the nurse, him, and myself to advocate on Adam's behalf.
The children's allergies are overwhelming at times, especially as more and more are discovered. I feel like a crazy woman to others, even to the nurses at the doctor's office every time I call about another reaction from one of the kids. They know I'm telling the truth, it's just that it's so unbelievable. One of the nurses said to me last week,
"I can understand your own children, but the younger two aren't even yours! I mean, come on!"
Anyways, I needed to vent and shed a few tears. I truly am in mourning over Owen's allergic reaction today. Part of me feels stupid for not knowing what it was, but then another part of me is in so much denial about there being more allergies to diagnose, that until our doctors says it's an allergy, I won't believe it. Hopefully I'm not the only one that's felt this way, perhaps the allergies or diagnoses are different, but I mean the wanting to quit part.
Please share your story, if you have one!
When Owen returned home the rash had definitely worsened. After nap time it had spread to his arms and legs. Originally I thought perhaps it was Roseola or maybe Fifth Disease. Owen had been sick. I was wrong. It turns out, Owen had broken out in hives. He was having an allergic reaction to the antibiotics the doctor was giving him. This is what I learned at 4:30 PM today at his doctor's appointment.
ANOTHER ALLERGY.
I took Baby L to his Communications Disorders Unit appointment on February 28th. As I explained some of Baby L's symptoms to the CDU Specialist, she proclaims, "It sounds like he may have food allergies." Just those two words, "food allergies" seem to haunt me EVERYWHERE I go, with EVERY CHILD I care for, whether they are my own biological children or foster/adoptive children. How does that happen?
Lydia broke out in hives during her last antibiotic treatment as well, not because of the antibiotic, but because it was flavored with orange, one of her food allergies. When I smelled the prescription I knew it would be trouble. I called the pharmacy and asked for the ingredients. They were unable to tell me the ingredients for the flavoring, other than to say it was orange flavoring. Of course you can't take back antibiotics and get new ones. So I took the chance and gave them to her. Thankfully it was only a minor reaction, because the orange content was so small, but still... ENOUGH!
Baby L started steroid nebulizer treatments two or three months ago. I don't remember specifically. The day he took his first treatment was the same day I gave him Tylenol for the first time. About 4 hours after the first dose of Tylenol, I went to changed him and realized he had broken out in hives that were starting to blister. They were all over his front and back, neck and spreading to his head. Immediately I called the doctor, administered Benadryl and waited. I took pictures of his back and tummy, just so I could believe what I was seeing.
Fast forward a couple of months and I decided to administer Tylenol a second time to see if in fact that was what caused the reaction. Sure enough, as I stripped him at his doctor's appointment that very afternoon, only about an hour after the dose, he was covered in hives.
Benadryl is a staple in our home. Just yesterday Adam received a dose. He had somehow gotten a hold of Owen's Life cereal. Thankfully there was no milk in it, or else we would have definitely been in far more trouble, but Adam is allergic to oats, which is one of the first ingredients. Adam doesn't understand his food allergies. He's two years old. As I immediately move the cereal away from him, he exclaims,
"Mommy! Yummy Life!" Trying to stay calm I hold him and explain that life is "danger" as we put it in our home. I tell him that it makes him sick. This is on my way to the medicine cabinet to grab the Benadryl. Adam sees is and shouts,
"YAY! PINK MEDICINE!"
There is something wrong with this picture. Adam LOVES Benadryl. I'm sure it makes him feel great, but I worry that he likes it so much there may come a time where he does really stupid things just to get some.
Just a week before, Adam had another dose of Benadryl because he got a hold of a sticker that was sent home on one of Owen's papers from preschool. Seriously, does anyone else live like this?
I am exhausted. I want to quit. One can't quit being a Mom of a child with food allergies, or any other special dietary need or special medical need, but sometimes, on days like today, I really wish I could. What I would give to just take it all away. I forget what it's like to live a life free of food, medicine, and an adhesive allergy.
The highlight of my day was finding out that the special needs preschool in our town is officially accepting Adam on a trial basis of one hour, two days a week next fall. They won't accept him as a full time student or as a part time student. It's too dangerous for him and his allergies. The school would have to rearrange a whole room for Adam and eliminate many of the activities they do throughout the day. Teachers feel it's not fair to the other children, to limit them so much.
What about Adam? He doesn't even get a choice in what's fair for him. His life isn't fair. It is so sad to me that Adam's trial to preschool is the highlight of the day. I am grateful, don't get me wrong. We were pretty sure we would have to home school him, until our pediatrician, the medical director of the special needs school, arranged a meeting with the head administrator, the nurse, him, and myself to advocate on Adam's behalf.
The children's allergies are overwhelming at times, especially as more and more are discovered. I feel like a crazy woman to others, even to the nurses at the doctor's office every time I call about another reaction from one of the kids. They know I'm telling the truth, it's just that it's so unbelievable. One of the nurses said to me last week,
"I can understand your own children, but the younger two aren't even yours! I mean, come on!"
Anyways, I needed to vent and shed a few tears. I truly am in mourning over Owen's allergic reaction today. Part of me feels stupid for not knowing what it was, but then another part of me is in so much denial about there being more allergies to diagnose, that until our doctors says it's an allergy, I won't believe it. Hopefully I'm not the only one that's felt this way, perhaps the allergies or diagnoses are different, but I mean the wanting to quit part.
Please share your story, if you have one!
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